Prognostic understanding among advanced heart failure patients and their caregivers: A longitudinal dyadic study.

Objectives: To examine heart failure patients' and caregivers' prognostic understanding (PU) over time, and patient and caregiver factors associated with their own and each other's PU.

Methods: We used longitudinal dyadic data from Singapore, involving surveys with 95 heart failure patient-caregiver dyads every 4 months for up to 4 years. We assessed the association of PU with patient health status, caregiver psychological distress and caregiving hours using random effects multinomial logistic models, controlling for patient and caregiver characteristics.

Results: At baseline, half of patients and caregivers reported correct PU. Patient and caregiver variables were associated with their own and each other's PU. Patients with poorer functional well-being were less likely to report correct PU [Average Marginal Effects (95 % CI) 0.008 (0.002, 0.015)] versus incorrect PU. Greater caregiver psychological distress was associated with a lower likelihood of caregivers reporting a correct PU [- 0.008 (-0.014, -0.002)]. Higher caregiving hours reduced the likelihood of patients reporting correct [- 0.002 (-0.003, -0.001)] and increased the likelihood of patients reporting uncertain [0.001 (0, 0.002)] PU.

Conclusions: We found PU among patients and caregivers was influenced by their own and each other's experience. Our findings highlight the importance of ongoing communication to enhance PU of patients and caregivers.